Happy birthday Alter

One year ago, I made my husband Alter a surprise party. I went all out and made quite a nice celebration and made sure lots of our friends could be there to share in the fun. That was the start of the many festivities we would celebrate in the coming months- our wedding, sheva Brachos followed. The parties represented how amazing it was that we were no longer alone and we now had each other to go through the good times and the bad, the highlights and triumphs of life. But so much has happened since then. We settled into a routine as a married couple.

They say you don’t really know who you marry till you’re married and boy is that true. Over the course of the year, I began to learn so much more about the man I married and got to see how truly amazing Alter is. Last week, I spoke at a seminary in Brooklyn. Alter’s cousin who is a teacher there, got up to introduce me. She began to speak about her cousin who has been through so many challenges and how he was known to be the man in thier family with nine lives. I realized she was talking about Alter. I heard things I didn’t even know had happened to him. She went on to list his many challenges and obstacles he’s endured throughout his life. She said his mother was determined that he would get married despite his ordeal, that she would do whatever she could to make sure he gets to find a wife. Than, I was called up to share my life story. As his birthday is tomorrow, I realize how much more important it is to celebrate another year, especially a year like the one we’ve had, even without the major parties. After I have lived with him and see first hand how he makes the most of every day even though it’s a struggle, it is a bigger reason to celebrate. Every year we are given in this world is a huge gift, but especially when you’re a living miracle. When Alter was born, the doctor told his parents he wouldn’t live very long. But he has proven to them how wrong they are. I thought I had learned what life is about and how to appreciate all life has to offer because of the challenges I have gone through but clearly, I had lots more to learn. Seeing Alter in pain with every step he takes but yet he chooses to walk anyway has taught me to appreciate every step I take.

I’m in awe of how determined he is to get the most out of each day, without complaining, choosing to look at the bigger picture and overlooking the times of suffering. As his wife, its a new concept for me to always be worrying about him as well as myself. I’m so used to being the patient but I have watched Alter go through some difficult times this year, and I’m so glad I could be there for him. I have to say that Alter truly shows what it means to make the most of your year you were given. Thanks for teaching me what it means to push yourself to your limit, to always be positive no matter what and to be patient because nothing lasts forever. I hope this year brings us only happiness, good times, great memories and a complete Refuah shelaimah. Happy birthday and many, many more happy and healthy.

The view from the other side

Growing up with Cystic Fibrosis, my family wasn’t able to go on vacation. There was too much involved to actually make it happen. Aside from a few isolated trips I managed to go on, for the most part, my travels consisted of visiting medical facilities around the country. But I was ok with it- I learned to be happy in your own backyard, how to make every day enjoyable in my own way- I accepted that it was just too risky. Even after my transplant, the whole process of taking a trip is overwhelming- I have to make sure I have enough of all my medications, wear a mask on the plane…Living a life with illness, I got used to being thankful for the little things so every day I spend feeling well and able to have normalcy is a wonderful thing.  There is an organization called Child Life Society that makes vacations possible for people living with Cystic Fibrosis. They built a house in Key West equipped with everything necessary for patients who normally wouldn’t be able to take a break and get away from living with the burden of illness. I spoke at a fundraiser for the Child Life Society last year and because I never had a chance to go to Key West, the founder of the organization said Alter and I could take a trip down there together for our honeymoon. Because both Alter and I have lived the lives we have, we are well aware that anything could happen  so we didn’t want to believe it would actually work out- Medical issues could come up at any time. But as we began to pack our bags last week, I started to believe that this time it was going to happen. We flew here on Thursday, giddy and excited! It was a long trip but we finally made it. We settled into the house- what would be our new home for the next week. We planned what we wanted to do each day and the places we wanted to see.

But as we know too well, we can plan and plan but at the end of the day, they really are just plans. Alter woke up the next morning unable to walk at all. He has problems with his legs but it had never been that bad. I didn’t know what to do, Alter had to get to a doctor, quick and he needed to be carried. He called 911 as I began to panic. Alter is always calm but I could sense his fear. The doorbell rang and I was so flustered, I couldn’t even open it. My voice was quivering and my eyes began to well up as the paramedics put Alter on a stretcher and told me to drive to the hospital behind them. I threw some stuff in a bag and somehow made it there in one piece despite the tears that were now streaming down my face. I went through the doors asking where my husband was and I was told to fill out paperwork. I wasn’t thinking straight, I just wanted to be let in and know that Alter was ok. I sat by his bedside in the Emergency room as doctors came by asking questions and sat there saying tehillim as they took him for testing. I kept thinking how weird it was for me to be on that side of the bed. I’m so used to being the one in the bed, getting poked and prodded but it was a completely different experience watching it all being done to him. I finally knew what it felt like for my family and friends who sat by my side the countless times I was in the same situation. It’s not easy, I wanted to do something only there wasn’t much to do. My mind was spinning- to not know where we would be spending shabbos, to be so full of anxiety and fear, not knowing what the problem was and if its going to happen again, my mind was racing. Would this hospital even know how to care for a complicated transplant patient? After finding out that we would be able to go home for Shabbos, we were relieved but nervous. Over Shabbos, we saw some improvement but we held our breath with every step he took. I know I’ll be nervous the whole time we’re here and we’ll have to change our itinerary and take it slow, not only day by day but minute to minute, step by step.

It’s hard to understand why things happen. We make the best of it because that’s what we’ve been doing all our lives. The one lesson I’ve learned countless times in my life has been proven once again- every minute we have here, in this world, every step we take here is a blessing. We have to enjoy and be thankful for every single minute because anything can change in the blink of an eye.